Extreme PEM - any experiences?

My wife, whom I written about before on this forum, suffers frm an extreme form of ME/CFS. Her condition has deteriorated as well during September-October. SHe now suffers from en extreme form of PEM where her muscles just wont work. A little bit to much work for the muscles (and in her case that can be putting som pills into her mouth) and it jsut says stop. She descibes it as when your lifting weights at the gym and after a number of repeats your muscles just will not be able to lift the weight anymore. I don't know if this is a lactic acid thing or has to do with enery levels. Any experiences from anyone?

If you measure her Heart rate laying down and is high, it is probably dehydration (in my case is when HR is 90+ , calculate max HR based on her age.
When I get soo bad like that, an IV or drink one pedyalite a day makes wonders, I do 6 salt tablets (Check for Blood pressure not to get high) and One gallon of water a day.

Does she have Orhthostatic intolerance??? Usually that is what sends me to bed,

This is not in all cases just giving you my experience and I am not doctor. Good luck.

I've had that exactly. In fact, I've described it exactly the same way. I ended up that way from trying to push myself to keep doing things for too long.

I was really, really severe for a while, and it got to the point that just the simplest activities were too much and were constantly draining my resources. For me, I needed to cut back even further (which barely even seemed possible at the time), and focus all of my energy on just scooping food into my mouth a couple times a day, etc. Watching TV, brief conversations, lights, ambient sound, reaching out to pat my cat, etc. were all draining out my resources. Pretty much all I was actually equipped to do was lie silently. I know this may sound obvious, but I would STRONGLY suggest that you wife try very hard not to do anything that gets her near that point where her limbs won't work anymore (even if they're trivial things). Over time, she may find that she's able to do progressively more without triggering the problem. But once things get that bad, it seems easy to do damage that takes a long time to recover from if we try to keep going.

For what it's worth, I am MUCH better now than I was then. ...But that whole first year of being bed ridden was pretty awful. And I'm still bed ridden now, just much more capable when I'm here than I used to be (so long as I'm careful). I've also gotten a lot better at recognizing my symptoms as effects of overexertion rather than something constant that I just need to learn to live with. ...Which means I can often prevent them, or at least head things off before it gets really bad.

I'm so sorry for you both that you're going through this. I wish you all the best.

If you measure her Heart rate laying down and is high, it is probably dehydration (in my case is when HR is 90+ , calculate max HR based on her age.
When I get soo bad like that, an IV or drink one pedyalite a day makes wonders, I do 6 salt tablets (Check for Blood pressure not to get high) and One gallon of water a day.

Does she have Orhthostatic intolerance??? Usually that is what sends me to bed,

This is not in all cases just giving you my experience and I am not doctor. Good luck.

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@LIJ ~ I second this suggestion to look into OI as a major contributor to your wife's symptoms. Several types of OI are common in ME/CFS. Getting tested (a cardiologist can do it) is the best way to determine if your wife has a major OI problem. There are effective (although not perfect) treatments for OI that could greatly improve her quality of life.

When I was in that same condition, my adrenals were not working anymore, I was suffering extreme orthostatic intolerance, my brain waves were about flat, I had pfeiffer, cytomegalovirus, bartonella, some other viruses as well as a severe form of chlamydia pneumonia, vit B12 deficiency, low Q10, low gluthation, candida, gluten sensitivity.
After years I discovered all these can be treated ... so there is no need to suffer bedridden in a darkroom for over a year as I did at the time.

It was a hard way up and I'm not healed yet after 5 years but the nightmare is over.

I either have extreme PEM or I'm suffering from an undiagnosed disorder.
I experience episodes of what seems like cataplexy. I've never been dx with ME but have many/most? of the symptoms without ever having contracted a virus (that I'm aware of). I have been diagnosed with POTS, OI, and EDS. Seizures have been ruled out and its unlikely I have narcolepsy (often seen with cataplexy) bc I don't have daytime sleepiness.
My frequent episodes are at times related to the little walking I manage on a good day or after I've climbed a flight of stairs or even from just getting up and around in the morning. That seems to fit in with PEM.

But sometimes I've been perfectly fine for days while being inactive at home when suddenly while watching TV or reading I'll get some subtle warnings that I'm about to have a cataplexy episode. It will look like I've suddenly 'conked out", I just kind of 'faint' although I'm still conscious and hear everything. I will be unable to respond to my husband or anyone else during that time as I can't talk, nor can I move. I'm lifeless. Before and after the episodes, I will sometimes have slurred speech. It's as if my brain has been deprived of oxygen, even when I'm not walking.
I'm looking into the possibility of MCAS or Periodic Paralysis but its possible that I suffer with extreme PEM.
Does anyone think my situation sounds like PEM/PENE ??

@ Marlene, Addisons and MSA were the first things checked out by my endocrinologist. Strangely, my cortisol levels were fine, not even borderline.
I've read on PR that SSRI's help some people with their dysautonomia. I have been reluctant to start the zoloft (prescribed a year ago) but with the cataplexy/extreme weakness escalating, I'm desperate and started with 12.5 mg first thing this morning.

A year ago, the symptoms occurred equally after the slightest mental or physical activity. POTS must have been a large contributor to that because by going on Mestinon, the crashes were practically eliminated for 2 months allowing me to leave the sofa of the darkened living room and able to even drive a car again! But then they started up again and my neurologist wasn't comfortable with complying to my request of increasing the dose.(was already on 180mg/day long acting).
While the leg weakness/crashing started to come back, I noticed that mental activities (texting, computer etc) weren't nearly the trigger they used to be. My crashes don't seem to follow a true pattern ie. eating (haven't found a particular food culprit), climbing stairs, small amount of walking or even random times of just watching TV or basically doing nothing are things that may have been done just prior to an episode.
I've always had headaches and migraines as far back as I can remember. The frequency fluctuates.

Ouch, same story here. We shoudl stay in touch ... I have severe chronic daily headaches since the age of 6. I'm 42 now.
I take Topamax 100mg to ease the pain since a few years and I eat glutenfree and avoid additives. That helps in my case. It took a few months before it helped. I also take molybdenum and biotin, I tried another one (forget the name now) bit it is incompatible with Topamax.

Have you been tested for epilepsy or did you fall on your head when you were a child?

I had it even when someone smoked a cigarette at the entrance of the hospital once! I collapsed 1 minute later at the helpdesk.

@ Marlene - I pm'd you.
Epilepsy/seizure was very much suspected by the neurologists who saw an episode occur. 24 hr monitoring with EEG for 6 days ruled that out. I was told to seek counseling. What???

My wife, whom I written about before on this forum, suffers frm an extreme form of ME/CFS. Her condition has deteriorated as well during September-October. SHe now suffers from en extreme form of PEM where her muscles just wont work. A little bit to much work for the muscles (and in her case that can be putting som pills into her mouth) and it jsut says stop. She descibes it as when your lifting weights at the gym and after a number of repeats your muscles just will not be able to lift the weight anymore. I don't know if this is a lactic acid thing or has to do with enery levels. Any experiences from anyone?

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If its to do with lactic acid making her unable to move much, I'd think she woud be getting quite a muscle burn. I think it would be to do with something else.. energy eg AMP or something.

I have had a lot of experience with that symptom in the past. Ive had times where Ive had to use a neck brace just to hold my head updue to my muscles having no energy or whtever it is. and yeah.. repeat of muscle action esp if rapid, is a huge issue for me.

She needs to cut back more on what she's doing, you may have to feed her!! (or she may need a feeding tube if she's being made worst by feeding herself). I myself find that when at this degree of severity, I really struggle to chew food as my jaw also burns out with the repeative motion of chewing, making it harder and harder to be able to chew.

For what it's worth, I had a mitochondrial function profile done to check my ATP production during the period of time where I was having this kind of issue (muscles going completely dead and unmovable). It came back that my ATP production was really, really low. So it might very well be an issue of cellular energy.

For what it's worth, I had a mitochondrial function profile done to check my ATP production during the period of time where I was having this kind of issue (muscles going completely dead and unmovable). It came back that my ATP production was really, really low. So it might very well be an issue of cellular energy.

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@ Sparrow - what is involved in mito function profile testing? Where is it done?
My blood pressure and heart rate are chronically low but vitals don't always correspond to severity of symptoms. Other times I suddenly have severe drops with or without meds.
Yesterday I was very symptomatic @ bp 84/59 pulse 76, took 5mg Midodrine (rarely take bc of its ineffectiveness)
2hrs later 113/67 p 52. (best bp I've seen in a long time...ever?)
7 hrs. later still intensely weak and cognitively affected at 93/67 p 44.
This morning, pulse 49.

I cannot climb a flight of stairs or at times, even walk in the house without the weakness and cognitive impairment occurring. O2 depletion to brain?
Going to the hospital has always proved useless, even causing further issues so we don't go that route anymore.
This seems so heart related to me, but perhaps it is originating at the cellular level ?? Should I ask for particular heart testing with a cardiologist. How is ATP measured?

My wife, whom I written about before on this forum, suffers frm an extreme form of ME/CFS. Her condition has deteriorated as well during September-October. SHe now suffers from en extreme form of PEM where her muscles just wont work. A little bit to much work for the muscles (and in her case that can be putting som pills into her mouth) and it jsut says stop. She descibes it as when your lifting weights at the gym and after a number of repeats your muscles just will not be able to lift the weight anymore. I don't know if this is a lactic acid thing or has to do with enery levels. Any experiences from anyone?

@ Sparrow - what is involved in mito function profile testing? Where is it done?
Should I ask for particular heart testing with a cardiologist. How is ATP measured?

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I'm not sure about other basic heart testing (I've had some done, but the issues I'm having aren't ones that have shown up on their standard tests, or the abnormalities haven't been of the type that they care about), but I would say don't ask them about ATP. ATP testing isn't something they would do for you at a hospital anyway, and they'd probably just look at you sideways for bringing it up. I made the mistake of showing a doctor my ATP results once, and that was bad enough. Kept it to myself from then on.

I had mine done through the research lab associated with Dr. Sarah Myhill. To be honest, though, it's kind of an expensive test and knowing the results didn't really help me any. It was good information to have confirmed in theory, but in practice I'm not sure I gained much. I already knew there was no energy in my limbs. There's no real treatment besides some supplements - CoQ10, carnitine, niacin, etc. and that's not really a cure - they're just meant to support healthier function. In retrospect, I could just have taken the supplements without having done the test. It seems like poor cellular energy production is a pretty standard part of this illness.

For me personally, learning not to push myself at all when I'm feeling that strained has helped a lot, and over time I've gotten gradually better and been able to do progressively more. Early on, I was trying to go up stairs and having a super hard time with it. Now I would never attempt that if it was that hard. I find that pushing through that badly tends to have a lasting effect on my capabilities. The exercise physiologist I've been working with (who is knowledgeable about ME specifically) doesn't want me doing anything that's "somewhat difficult" or harder. ...Which pretty much fits with what I've found helpful myself.

Keeping myself extra hydrated has also helped me, possibly by compensating some for low blood volume.